Hello Ix,


Quote Originally Posted by ixchelkali View Post
There are things to like about it. My absolute favorite bit is where it says "CFS (also called, more descriptively, myalgic encephalitis)."

The symptoms list is better than most; it mentions post-exertional malaise, and overall makes it sound serious. In the severity section it says “CFS produces very significant disability with substantial disruption of activities of daily living among those meeting strict case definitions,” so at least they’re not saying it’s too trivial to worry about.

However, in the section on screening questions, it says “No sensitive or specific question is feasible for CFS.” How about, “Have you been diagnosed with CFS?”
And then they say “The rate at which potential donors carrying a criteria based diagnosis of CFS would present to donor centers is unknown, but probably low in light of the associated disability.” In other words, they’re probably too sick to get to the donor center anyway. That’s probably an accurate guess, but I wouldn’t want to bet the blood bank on it.

And of course, the most discouraging part is that, while they do say that it would be prudent to defer those with an XMRV diagnosis, they don’t think that prudence dictates deferring those with ME/CFS. It makes it seem as though they are more concerned with whether they could be held responsible for someone contracting the disease than they are about whether someone contracts it.

In a way, I shouldn’t mind; being deferred from donating blood might just add to the stigma ME/CFS patients already face. But I hate the thought of even one more person getting this, if it could be prevented. Couldn't they act, as the politicians say, "out of an abundance of caution"?